Fibromyalgia and Chronic Pain, Do any of you go thru time periods where you cannot sleep, and?

time periods where all you want to do is sleep? I'm going to bed late and I awaken about 3 hours later, wide awake, GRRRR! Then I need sleep during the day, so it's a vicious cycle. I think I'm having a flare and definite fog.Does THIS HAPPEN to anyone else? If so, what do you do about it? I've got things I need to do, and feel horribly guilty if I don't make a perfect dindin for the family, or forget to make the bed, or blow off the laundry, have husband do it instead. I haven't made a really great dinner since Thanksgiving, and they are used to a good dinner every night. Ugh, the guilt!This damned guilt is killing me! I WANT to do all the things I mentioned, yet I'm not always able to, and I NEVER vacuum- it's the worst activity for me. Also, does grocery shopping totally jack you up? It jacks me up bad!What is YOUR worst activity, and how do you overcome the guilt?Thank you, for any that offer their story, or add advice,Lara

Responses (14)

Hi, I don't have fibro, but I went through it with RSD. That was 20 years ago and I looked older than I do now-even with the cancer on my face. I paced around the house,.I spent hours in the bathtub in the hot water trying to get relief, the vibration of the vacuum cleaner sent me into levels of a different type of pain. Mine was caused by a breast biopsy-that when doctors see it today-the word butcher comes out of their mouths. So I'd sleep a little, then have night mares. I dreamt that men were kicking me with pointed cowboy boots, and dreams that were much worse-they made the doctors almost sick-white faces, etc. I prayed, I wept, I sat in the bath tub. The AF gave me pills that they give surgery patients as part of the pre-surgery anesthesia protocol-like hysterectomies, etc. They didn't work at all. TG that a miracle happened for me. I wish that I could walk with you.

I wish that I could carefully hug you and kiss you on your cheek. We can talk anytime you want. I do know what you're going through. I'm hoping that the fibro patients on this site can help you. Are you in a pain clinic?

Hi meyati, here you are, going thru what has to be one of the worst times of your life, and you are trying to comfort me! You really are a sweetheart. It takes a special person to do that, to keep giving of yourself when you are in a bad spot yourself. You have put this into perspective for me, and I must admit I'm ashamed of myself for how I'm complaining! Life, for you, has become a scary place and I want to reiterate that I'm on YOUR side, meyati. Big hug right back to you,Lara

Do not be ashamed. Your post actually helped me. First of all, I was able to find a relief, a remission for my RSD. I f feel so bad for you, because I have been in that position. You are in the position of being in terrible, terrible pain. You are seeking relief, a form of remission, trying to fund a doctor that has that one idea that might give you relief; a doctor that knows about that one med that other doctors dismiss for one reason or another. That can happen. You too are a brave and compassionate person. I think that the sweetest prayers are the ones for others that are caused by compassion.

I was going to wait until this weekend or next week end before I posted anymore about my problem, but I want to share this now. I saw the radiologist Dec. 7th. He believes that 20 radiation treatments should heal me or at least put me in remission for many years. The hospital is about a half of a mile from my house. He says that I have 2 things in my favor-actually 3- Most patients come in with the cancer already spread to their lymph glands, larynx, and hyoid. Mine R clean. #2. My surgeon properly took out the affected areas-which many surgeons don't. This will make radiation more viable. #3-He's impressed that I already contacted my dentist on my own, and I have a letter from my dentist that my teeth and gums are healthy enough for radiation, and that I already have the protocol for mouth care during radiation. He says that often bad teeth-delays and complications from bad teeth create problems with radiation therapy. He's delighted that I'm caring for my self, being pro-active.

At his office I was told that I needed a mammogram. I politely told them-No way, Jose. After I posted U, I sent him an Email that quickly explained the biopsy with less detail than I told you- bare facts- told him that I have copies of the pain clinic records-then the AF bullied me into getting a mommogram for the left breast at his hospital. When I was leaving, techs and patients came out and hollered that I was crazy, I was a retard, etc. Said, "Come quick the crazy women is leaving." I didn't cry then. That I drove to the AF hospital crying. I told him that I will do what he wants-but I will not do anything like a mammogram where I have been so humiliated. I told him that if the RSD came back from a mammogram, that the pain of dying from cancer would be insignificant. I asked him to understand this, and no matter what happens-Thank you for being so nice.

The enlisted females hugged me, got the doctors out and they just about cried. They filed complaints-that they wouldn't send patients there again. I didn't tell Dr. Garg about that. Why bring up unnecessary things-I have too many things going on 2 quickly. Dr. Garg replied and said that he'd tell the tumor board about the mammogram issue, so it's not held against me. Tomorrow, I have my follow-up with the surgeon, and I'll ask her if she saw signs of the cancers on any bone. Poor Dr. Garg said that I was a genius for thinking of that.

I realized that after posting to you, that I could focus on the words-and I should briefly explain about the RSD. So thank you for helping me. I hope and pray that you get relief soon.

meyati, I'm SO happy that the doc's think 20 radiation treatments will do the job for you! And that your teeth are healthy and can handle the radiation!This is cause for a celebration, so let us open a bottle of champagne and we can all take a virtual sip... Love,Lara

Thank you darling--- I just hope that the tumor board agrees. When I had the surgery, I could hear scraping. I'm getting ready for a follow up, and I'll ask her if that was cutting through cartilage or scraping the bone. That will make a difference. If the cancer is already on the bone, the radiation won't be effective. I really need to know if she knows why Dr. Smith wants the bones to be removed. I'm having trouble with my little nose-it's not like fibromyalgia or what many of you go through. My nose and sinus aren't draining properly. I get a snot plug that shuts off my breathing, trying to blow my nose blows the fluid into my Eustachion tube, and I'm prone to ear aches and infections any way. The tinnits in that ear is getting so bad since the surgery-and they say that radiation also causes problems. A hearing aid doesn't work for tinnitus.

I hate my Nurse navigator--- I'm trying to get her changed--- I'd rather have a janitor-She didn't give me a card-but had me write her phone number on a piece of paper. Everybody -even the receptionists-say you can call or drop by and visit me any time. I asked her twice for an Email. She's telling everyone that I'm confused.. I really love that---

Dear Mac, Definitely. I go through times where I want to take a shower and my body procrastinates and I'll say... well it can wait until tomorrow. But I force myself to at least bathe. lol. My husband has had to come home after working a hard day and cook at times, and doesn't gripe about it at all. It's like he knows what my body is going through. But noone, and I mean noone can imagine or think they know how it feels unless they walk that road. That goes with just about everything in life. Walk that mile in someone elses shoes and you'll have a different opinion of them. Housework nearly kills me at times. I cannot even unload the dishes and put the dirty ones in without wanting to chunk one through the air into the living room, hoping not to hit anything of value... of course. lol. The worse for me is the fatique. Not wanting to do anything. Of course, I want to, but I lay their on the couch and vegetate sometimes, because it gives my body some relief.

Ruthie, you are so kind. But my 'best' isn't good enough. My home is ok, I do keep it dusted and neat, but I cannot vacuum, so the dust bunnies just roll around on the floor, until I see them, then I attack them with a dust mop.I suppose it's the cooking thing that makes me feel so bad. I just don't do a good job while feeling like this. They are used to really good (sometimes complicated) dinners, and now that I'm in flare, we are ordering pizza's or I'll make a big roast and that will last for two days, so I get one day off, then make something else that lasts for two dinners. My husband is very sweet about it, but the problem is ME! I put pressure on myself, I force myself to stay busy and NOT stay on the sofa all day. If I sit down, it's all over with, I'll grow 'roots' into that sofa. But today I AM GOING to sit on that sofa, after a long hot bath.

Thanks for letting me know that I'm not alone, dear Lady, that makes me feel understood and not so alone. Not that I'd wish this sh*te on anyone! I'm hoping someone comes up with a cure for FMS during our lifetime, all of us! I bet it won't be a doctor, it'll be a patient that comes up with a cure.Love u lots, Ruth!!Lara

Anonymous 13 Dec 2012

Macadoo, I'm sorry, girl. But I had to laugh about roots growing in the couch. lol.lol. Sometimes when I've went all week, picking up a kindergartener, doing homework, a nap if he needs it, then we must have an ice cream break together..Every Day (i like this part. tee hee), and dealing with his little cute but very ADD self, on my hubby's day off I will just lay in the bed. No getting up. NO movement at all. lol. All Day. My hubby will come up from time to time and raise the cover up a bit, and gently say..I was just making sure your ok. lol.lol. He will just leave me alone all day. I'll wake up at about 7:00 p.m. and apologize for sleeping all day, and he'll just say... Obviously your body needed it honey. ha ha. This is gross, but I will be so sound asleep their will be a little drool on the pillow case. Ooooh. Yuk. lol. Then I wake the next morning and do it all over again.

Ruthie, you make me laugh, too! Krazy dazy? I like that! I just can't let myself sit anymore. When dinner is done, and I've cleaned up the mess (he tries to help, but I won't let him... he had to do everything round here for about five years, whilst I was stoned on oxycontin) then I collapse into a chair and fall asleep, then I awaken to Jimmy Fallon and stay up late. I guess staying busy is better than doing nothing, like I used to do!Macadoo

Anonymous 15 Dec 2012

That sure would be interesting to awaken to Jimmy Falon... depending on who was on there and what the hoot they were talking about. lol. Ruthie

You are definetly not alone! I feel like this all the time. I am only 31, so Ifeel awful about just "laying around and doing nothing." I hardly ever vaccuum or clean my house. Unless my landlord is coming for a visit then it's crunch time and I spend two days getting everything spotless!! LOL then i pay for it. I can barely get myself to get in the shower at times, I feel so icky, sometimes I feel so lazy. I am just like I will do it tomorrow. Then I keep putting it off. I want to do things, but I just can't. I have a six year old son and I want to get and do things with him but I can't. That hurts the most. I think that's what makes me feel the most guilty. I try to make dinner, but I just can't. Sometimes I can get in the mood and groove, and can get a good dinner made, and i love to bake too. But I can't eat very much so the food ends going to waste anyway.

My husband can't be here right now, but when he was he took over helping me clean the house and making the dinner. He would get our son ready for bed, give him bathes (that was the worst for my back bending over the tub) and he'd get him ready for school and get up with him on wknds so I could sleep. Grocery shopping does take alot out of me too. I love shopping though. Maybe you could try using an electric cart when you go. That might help with some of the pain. I know you probably would feel guilty about that, but it there for people who need it. Don't worry about getting dinner made and having your clean everyday. Do what you feel up to! If you can only get one load of laundry done in one day, then that's OK. You don't have to feel guilty. We have a very debilitating disease, and I am sure your husband and family will understand. If they are unsure of what's going on with you, start researching fibro on the Internet and go through it with them and help them understand what your going through. It is never easy when your not able to do the things you were once able to. But when you have a supportive family out there, it really helps. Are you taking medications to help you sleep? Or for the pain, inflammation? Muscle relaxation? I can recommend some that I have been on for quite some time that are non-narcotic. if you like. I hope I have helped you some what. Just know your not alone!

Hi Joeiy, I haven't seen you in forever! It's nice to see you now. I am on pain meds, and have an array of muscle relaxers and a benzo if I need it... I've been taking a benzo at night, which helps me relax those muscles that are so very tight. My hubby and daughter are supportive, they understand about the pain and my lack of certain abilities at this time. I AM the one that puts pressure on myself.

I must share with you a recent event... my husband asked for a certain dinner that he loves. I bought all the ingredients and wanted to make it, yet I put it off for two days! I just couldn't imagine trying to get that dinner on the table, but I DID IT. I forced myself. He never asks for anything and all he wanted was this particular dinner, I HAD TO MAKE IT! I felt great when I accomplished this dinner. I just find that sad, I'm reduced to feeling good about a dinner I cooked?! I used to have my own business, I used to make a good living, but now I'm lucky to get a dinner on the table! That's the crux of it, right there! I'm comparing my old self to my new self, and I don't like what I see.Thank you Joeiy!Lara

I think we are all in the same boat. I banned vacuuming a very long time ago. I can't deep clean at all. I remember the days where I cranked my music and cleaned my place spotless and felt so relieved and good about myself. Now putting clothes away on the weekend and doing laundry is a victory! I cut my work schedule to 3 days a week, it's helped a little but the time I need just to get out of bed is ridiculous. I had to start showering at night and I use to be the type that felt disgusting without my morning shower! But forget it, I practically limp hunched over to the bathroom in the morning now and I'm 36. My boss has no compassion. I'm holding on as long as I can because its the one thing left to give me self worth. No more running, cooking which was my all time favorite, gardening, hiking... there's so little enjoyment my left. I too grow roots into my couch on the weekends. I don't have to shower.

My boyfriend takes care of my 3 little dogs so I can sleep. By Sundays, I feel worthless, disgusting, depressed then start a flare to suffer through my work week. I'm so glad I joined and know I'm not alone. The vacuuming makes me smile. My pain doc actually wrote on a prescription pad "No vacuuming". The days I actually get to the grocery store and get a few errands done make me so happy. It's unbelievable what defined me 7 years ago to what defines me now. And I still allow myself a pity party every now and then as I've been so isolated with this disease. But now I go on here and read posts that could pretty much be my own. I hope you all have a stress free, comfy/cozy weekend without too much pain, and definitely no shame or guilt!!! If I've learned anything the past few days is that there are so many of you just like me, with daily struggles, hardships and vicious pain cycles. We did not ask for it and its been very hard for me not to self deprecate, but I'm definitely learning and in a better head space since I joined. So thank you all for sharing and just being here. Happy weekend to all!

Hi Jessica, I know just what you mean! What used to define us is now totally obsolete. And I also just LOVE the fact that your doc wrote you an rx for No vacuuming! Mine would do the same. He also wants me to try pot for the chronic pain, but it didn't work, I tried it. The state I live in allows medical maary jane. I wish it worked, I wouldn't need oxycodone! But I also have other things going on, two pinched nerves and neuropathy that feels like bee's are stinging me 24/7. But hey, it could be worse!My sense of humour is intact, so I'm very lucky in that department!!Lara

My states allows the medical Mary Jane too. My doctor pushed it as well. It helped while I went through a divorce, it helped my emotional state and at times I'd forget about pain just because i was giggly, but then my ex would get mad at me because I was temporarily not miserable, then I'd just be sad and in pain all over again :-( But I used it very briefly then it just made me paranoid. When you already have anxiety and severe panic attacks, I just wanted it to go away. Then my pain doc asked me where his 94 year old pt should go, he wanted to make sure he was going to a reputable place where he would get educated and looked after. Then when he told me his diagnosis, diabetic neuropathy, I thought, oh boy, don't think I want a stoned 94 year old who probably has some diabetic retinopathy and nerve damage driving around my neighborhood!!! Bless his soul! Truly, the medi THC really helps very specific populations and not really the pain peeps. I'm wondering if we live in the same state with same doc??? Keep your sense of humor! I remember how good it felt to laugh to the point of tears. One day soon I hope... but I still won't vacuum! Jessica

cupcake, girl, I will NOT touch that vacuum unless Jesus is coming over! I might then, or my father, I might then, too. But mostly just Jesus, that's THE ONLY reason to vacuum. But He would be the only one to truly understand the tumbleweeds rollin' cross my floors. And now, my big farm table is covered with wrapping paper and ribbons and gift cards, my bedroom FILLED with boxes from shopping online. What a hot mess this is! Now I gotta clean before the merry maids come to my house! I'm serious.Doesn't everyone do that, though?Lara

Yes!!! In high school I'd get so mad at my mom, telling her what's the point if cleaning when the maids come tomorrow??? Now I get it as an adult ;) Maybe not vacuum for Jesus. He can turn water into wine, so who knows what he could do with tumbleweeds and dust bunnies, but I bet it's impressive. Have a great day!

Thanks for sharing all of this 'girls'! I especially like the 'no vacuuming' prescription part and a reference to how isolating this all is. Feeling incredibly isolated lately. Don't have the energy to socialize At All. Can't act like everything's normal and put on a show for even a brief time. Hate that I feel self-pitying; but I can't hide it. A.B.H.

Hi Lara,I rarely have any problems because I take the highest dose of Trazodone, but I started with a very low dose to start with which put me right to sleep. The Trazodone is for my fibromyalgia which has helped it tremendously. It's not supposed to be addictive at all. But everyone is different for what they can tolerate. I also take the lowest dose of Klonopin every night which is a little sedating which I need for myoclonus which is involuntary jerking of my body. Impossible to sleep without it.

My biggest problem with the fibromyalgia, which I have never heard of from anyone else with fibro, is getting comfortable in bed. My skin is extremely sensitive. Even the softest furry blankets can be irritating. I even need the soft furry blankets to pad between my knees when I'm lying on my side. And I need the same blankets under my elbow resting against my hip bone, which I need to have placed up there for my shoulder pain. But I also have problems using my hands at all and doing much. It's just since my stroke, with my migraines, I can barely move anyway.

But I am very disabled by 24/7 migraines, so I greatly understand your daily problems with functioning. I have to hire someone to do the vacuuming, also because of my stroke disability. And a grocery shopping can give me a severe migraine, so that by the time I get to the check out, I may be crying from the pain and have to ask for help loading my car.

I take Ambien CR for sleep. I was on Ambien for over 9 years before I switched to CR, and I love them. I take Zanaflex which is nonnarcotic non-addictive muscle relaxant. I only take it at night. So that with the Ambien really helps me sleep. I take Voltaren in the Am and PM. That is a higher dose NSAID. It is great. I also take Topomax for migraines, tension headaches, I have been on that for over 5 years. I take Pristiq for depression, and Concerta for Chronic Fatigue disorder and ADD. (helps me concentrate but not stay awake.) My 6 year old son is on 100mg of trazadone plus Kapvay which is a long acting form of klonopine. And a couple other meds just to get him to sleep at night. I think if you have a low tolerance to medication, trazadone might work, but generally it doesn't. It is also an anti-depressant. Which a lot of meds are, but You need to do your own research if your looking for any medication, this website is a great place to look.

And find anything you need to know. Good luck if have any questions don't be afraid to ask. I have helped myself, my son, husband and my mom, get what they needed. I am in school right now fro Psychology, so I can help a little :)

Hi sara, it's always great to see you! I know just what you mean about sleeping with strategically placed pillows and blankets! I, too, sleep with a pillow betwixt my knees, as that bone on bone pain can cause insomnia in itself. Your skin sensitivity is very common in FMS. The lightest touch can cause horrible pain, like a handshake or a hug. I understand that. I'm happy that you have someone to vacuum for you, I should hire a maid, but they are SO expensive! Where I live it's about one hundred american dollars (no peso's, no yen) for about a half hour of work! Plus, I usually clean before the maid comes to my house... I just KNOW you all know what I mean when I say that, everyone cleans before the maid is coming to their home, LOL!Sara, if I don't see you for a while, have a happy Christmas!Lara

Hi Lara,Thanks for confirming the bed situation, except my problems are worse since I had the Prolia injection. Also I always pick up things before the maid comes so that she can vacuum better and clean the kitchen counters better. LOL

Hi Sara, in regards to your terrible migraines- have you ever tried Botox? Medicare covers it for migraines & I've been getting injections every 3 months for around 3 years and it has really helped!!! Both in a reduction of the number of migraines I get but also the severity. Also, before getting on Lyrica I could not stand the pain of being on my side and my knees touching! Now it doesn't bother me at all. Hopes this helps a little, D

Thanks Darlin D. Yes I've been getting Botox injections every 9-10 weeks for the past 2.5 years. They have helped a lot, but last time and 2 times before that, they didn't work very well. I'm wondering if my new CPAP mask may have pressed out the Botox liquid last time. Also I get nerve block and trigger point injections every 3-4 weeks. Plus I wear a 24/7 opiate patch called Butrans patch. Plus several meds that I take daily. It's very difficult to treat because it was caused by a major stroke.

Wow, we sound practically like twins in regards to what we are taking & the treatments we are under going! I used to have severe sleep apnea & my migraines had almost gone away after I lost a LOT of weight but after a car accident in 2006 & all the resulting surgeries & procedures, & implants I have had them again. I have just started seeing a headache specialist (neurologist) and he explained to me that opiate meds are the worst for headaches/migraines. So, after getting thru my recovery after my latest neck surgery, I'm going to get off all my meds with his help and start fresh (plus I really want & need to start having kids & I'm getting up there! Lol!) . Best of luck to you!, D

Hi Darlin Di,I'm interested--are you also getting nerve block and trigger point injections? If so, wow, we are twins in some ways. The Butrans patch gives a very low dose of an opiod. I finally was prescribed it after 3 years of barely being able to walk without it exacerbating the migraines. To go to the grocery store, I was often in tears crying in pain at the checkout counter. That's how disabled I was. I'm still fairly disabled from my migraines, but at least I can walk a little bit. I can understand you wanting to be opiate-free, especially since you are planning to get pregnant. Good luck with that. I waited too long and went through an early menopause.

I also put on an anti-inflammation gel almost every day which calms down most of my developing migraines into lower level headaches. It doesn't enter the blood stream at all so that I don't risk rebound migraines. (Let me know if you would like the "recipe" for it, but it does need a prescription and only specialized pharmacies can make it up.) I have some type of headache every day--24/7.

The medications that I take daily are Petadolex, an herbal medication and an anti-depressant which also helps the pain. Please let me know your response to any of this info. Thanks for your comments!

I went thru a period where I couldn't sleep, and without meds, I still don't. I hate to vacuum, sweep, or scrub the floor, my back spasms like I was lifting weights. Making a bed is one of the hardest things we can do. Real fun for a nurse, lol. Here's what you have to do to live with fibro, get rid of the guilt and don't allow someone else to make you feel guilty.

Amen--The closest I come to vacuuming is brushing the dogs and their teeth. It's almost impossible to vacuum, mow the lawn, and rake leaves. My son's girl friend nagged him how the house is going down hill- he told her not to come over. He has a bad back and can't hardly do much, except sleep. We don't have garbage or dirty dishes around. I just cleaned the pantry touched up the paint and put in a new clothes dryer vent. I didn't need the vacuum for that-just a bucket of hot soapy water and elbow grease. You do what you can when you can. I tell the hounds that a short walk is better than -no walk.

I'm not sure guilt is the right word, but guilt certainly covers some of the feelings and is easily understood. My son and I talk about this every so often. I feel useless and that I don't have any value-so does my son. We feel defensive about our limitations, especially when somebody makes negative remarks. My son banned his girlfriend from the house, bc she couldn't understand that we aren't perfect house keepers and vacuum cleaners are hard for us to push. He didn't want to be nagged, and for me to be put down by her. He told her that I didn't want her to come over. She asked me the other day why I didn't want her over. So our pain problems cause personal problems. I found this out last week. I wondered why she stopped coming over. It's not just that people don't understand, they want to call us lazy, to accept blame for things that we can't control, they think that we want attention and make up things to get attention.

They don't realize that we'd do almost anything to be normal. That we don't want to draw attention to ourselves, which is why we avoid handicap parking when possible-leave the store's electric scooter for somebody that's worse off than we are. We have fear of rejection; fear that it'll get worse and stay worse, and that we won't have a decent doctor.

I now have a mobility chair and my husband bought me my own scooter. To my amaze he read up on fibromyalgia for himself and went to a few doctor appointments. He said he do not care what people think. He even tell my two adult children with Fragile X Syndrome we have to help mom. She has taken care of us over the years so we can help. I'm blessed. Not many people come over but they keep there thoughts to there self. If they do say something I'm going to say "so you are volunteering, what day will you be coming over to help out". When I'm hurting I don't feel guilty. I'm down a lot but my mother always taught me don't let others put you down it will kill your spirit. Fibro family lets encourage each other and do what we can and don't try to please people who don't understand our condition.

i know how you feel i too have fibro and i go days with out sleeping theni can sleep for days !!this sucks but it's my life with fibro!!and when you add chronic back and stomach pain to the mix it really sucks!!you might can get something to help you sleep it might help you !wishing you the best !!

Have everything you have! I pray for a successful morning if you know what I mean but most days am miserable and feel like a razor is slicing the insides of my tummy. I've been up since yesterday morning. Couldn't sleep but finally took some meds so i know where I'll be all day :-(

sorry so long in responding!!! sounds to me we are a lot a like with our pains!!i'm hoping after my hernia surgery the 14th of jan. that some of my stomach pain will ease!!i'm tired of feeling like someone is cutting my stomach!!hey you might have a hernia too!this is my 10th hernia surgery but they have repaired over 20 of them!!like 3 to 5 hernia's fixed per surgery!!hoping you find relief from pain!

Hi Lara! I understand your sleep dilemma, as well as the fibro-fog, and want you to know that you are not alone. Not being able to sleep through the night, as well as daytime fatigue, could be from the fibromyalgia, but you may also want to consider sleep apnea. When I was still working, I'd go to sleep at night (with the help of Ambien, of course), but wake up 2 hours later and not be able to fall back to sleep. Then I'd sleep at work on my lunch break and not wake up in time, and get in trouble. I would even fall asleep at stop lights! My GP sent me to a sleep clinic, and it turned out I have a "moderate to severe" case of sleep apnea. My air flow was disrupted an average of 50 times an hour.

I can honestly say that if you have sleep apnea, you have a much better chance of improving your overall condition, just by using a CPAP! Sleep apnea makes fibromyalgia symptoms much worse, due to reduced oxygen intake. Oxygen feeds necessary nutrients to your muscles, so treating the apnea improves your fibro symptoms.

Whether sleep apnea is a possibility or not, you really need to address your feelings of guilt, Lara. There is absolutely NO reason to feel guilty about not being able to do everything for your family that you feel you need to do! Having fibromyalgia and fatigue is NOT YOUR FAULT! Reducing your activity level to help improve your symptoms is not a choice... it is a necessity! Therapy for the feelings of guilt helped me a lot, so I enthusiastically recommend it. Getting help for your guilt is nothing to be ashamed of, and not only will YOU be happier, your FAMILY will be as well! Therapy as a family group could be helpful, too, so they can better understand what you are going through.

As a side note, to answer your question "what is your worst activity, and how do you overcome the guilt"... Well, I not only have fibro, I also have herniated discs and arthritis in my back and neck (these developed over time, and I'm only 51!). I cannot do ANY vacuuming, grocery shopping, laundry, or cooking. My boyfriend does it ALL, even cleaning our 30"x72" guinea pig cage! I MADE him read info on my conditions, so he would understand why I was able to do less and less over the course of time. I supported him in all his endeavors as a drummer, then when he changed gears and went to college to become a tax accountant, so he needs to be supportive of me now that I need HIS help!

Lara, I really hope I have helped you, and please feel free to contact me if you EVER need understanding... or a quick kick in the butt because you are feeling guilt! :-) Erica

Erica, and everyone else, I want you all to know that I read all responses to my husband, and we had a long talk. I"M the one that puts the guilt on myself, he doesn't mind when I take a day off, or several days! I used to make a good living, and my home was clean and tidy. My home gets a bit cluttered now, and I'm NOT WORKING, so that guilt is horrible. I'm not helping to pay bills. That guilt stems from growing up, the dollar green was very important, and if you didn't make over 100K, you were not worth squat. But I can choose to live my life differently, I can choose not to feel guilty, Erica.

I've noticed that on the bad days when I'm growing roots into the sofa, I feel really depressed. I force myself to shower, put make up on and get gussied up. I'm very social and need interaction with people. So isolating myself in my home is a no-no. I must push myself to get out of this house every day, the bad part is I spend money that way! But I could hit a museum (inexpensive) or take a good novel and drag myself out to lunch, or call one of my gf's and get into some trouble! Most of my friends have jobs or careers, and I miss my career like mad! If YOUR doctor tells you to 'go home' that your fibro will only get worse, fight that! Don't quit your job, I wish I'd have kept mine.

Yeah I read it. I surge of mental energy just before I go to bed-I'm going to get up- ice my legs, brush the dogs and my teeth. Then I'll take the dogs out for walk, sand the cabinets, finish this, finish that. Right now I don't want to get up-its too cold to go out-the vacuum looks too heavy-where is the person that by 5, milked a cow, fed the livestock, strained the milk-after I changed out of my muddy milking clothes and had a bath- got the kids up for school, fixed them a burrito or pancakes and sausages. Saddled my favorite horse, and took off like a bat outa hell. When I was in my late 40s, my daughter-in-law was told to pick somebody my age and shadow us. I thought that she was reaching out the hand of better understanding, By 2 pm, she was sitting and crying. I was getting ready to paint a large room, moved the furniture, cleaned the corrals, and split wood. The poor thing bounced in the air if she got the ax up in the air.

I know that I couldn't split a single piece of cedar now-I can't vacuum-so why could I be able to split wood or clean a corral. I have another life, not one that I chose. I was put here for a reason. Listening to you and your struggles, it helps me to be here. you guys keep me from going crazy, most importantly, you keep me from going crazy.

I truly understand what you all mean about guilt. Unfortunately since my greatest disability is my migraines, I have to sleep at least 12 hours a night or they get far worse and I go for days at a time not being able to get up and do much or the migraines get worse. I do manage to work a little bit which pays part of my medical bills. I try to keep the kitchen cleaned up and do my own laundry and I do most of the grocery shopping. That's about all I can contribute to my husband who does all the other chores and has to spend hours at the ER or hospital with me.

And a lot of my time is spent calling and going to doctor appts and picking up prescriptions from 3 different pharmacies. With the 2 specialty meds I get, there is only one each pharmacy that provide it. How useless I feel. And sex has been a problem since my stroke, so I worry more and more about my marraige. I finally told the doctor to do something as my marraige was in big trouble--a bit of a lie. So the gynecologist has finally referred me to a specialist which is months away.

Hi Lara! I hear ya! Yes, I don't feel I have the energy to brush my teeth lately. Grocery shopping is a monumental task that I dread as I know it'll put me completely under. Spouse works a lot of hours, so want to have good meals in place for his return home... want to take care of he and my daughter as best I can, and myself as well, nutritionally. Let's just say, it's scrambled eggs again tonite!!! (We'll live) Guilt is something I have to contend with in general. The guilt of how my ill health affects those around me; how dismal and useless I feel and feel I'm 'infecting' everyone around me with the dreaded bleakness I feel; that I'll pull everyone I love down into this horrid black hole I'm in. Hmmmm... What to say to help us? Dunno. Well, if it were a loved one feeling this way, I'd tell them NOT to be so hard on themselves and that we'll all roll with each day as best we can.

Welcome, AnnieBHappy!! Actually, you really did help. You reminded me that if a loved one felt like I do, I would do all I could for that person, just as you would. That truly meant quite a bit to me, Annie. You are a prize, hope you stay with us!Lara

No need to apologize Lara!!! :-) At all. I'm kind of a newbie/oldbie. Had a short stint at the start... been really ill for awhile; dropped out of sight, am back again and so grateful for all the warm welcomes I've received including yours! I'm going to attempt the groceries today (may have to turn around and come back; but am going to try!) so we have some food around here. Especially something to make for New Year's Eve/Day! Yup, these days am happy if I can just get the energy to feed us; and the fortitude to forgive myself when I can't! Thanks for the post Lara! Keep On Keepin' On! A.B.H.

Groceries, Laundry, Stairs and any other repetitive activity like running the sweeper back and forth and back and forth. I feel for ya, MacIntosh12. After spending two years like that and so tired I couldn't even drive the car without getting out and running around it three times and jumping back in I decided to tell my psychiatrist that I was having difficulty concentrating and following through with daily tasks, sleeping through out the day and he was kind enough to put me on Vyvanse 70mg, then later I switched to Adderal 60 mg. I get things done and I get them done fast and I don't have as much fibro fog as before. I still have the get up from your chair and go into the other room to get something, get there and forget why the heck you got up in the first place. I always tell everyone that does that, that the answer is not in your head, it is actually in your butt.

I say this because if you go back and sit down where you where in the first place the memory pops out of your butt and back into your brain where it was supposed to stay. And we thought only twinkies whent to our butt. heeee heee Hope this helps some. Please let me know. Goood Luck!!!

Hi mfpdfibro, I am not a sitter, the only time I sit is when I'm at the computer.I can get more done in a day than a 'normal' person. I don't like to even watch tv or films until after 8pm. I am up from 6am (usually) until 11 or so, then off to bed. But that vacuum truly screws me up... that and chopping veggies! Go figure! But I chop veggies anyway.I tried one of those meds, actually you recommended it! It was a horror show for me, I was literally running through this house, and it was terribly unpleasant. But thank you anyway, I'm too high energy to take that stuff.Yet, I do have problems sleeping at night sometimes, and can be up 24 hours straight. Thank you again!

Lara, Another thought crossed my mind about your difficulty sleeping and feeling like needing to sleep during the day. Sleep apnea is very common and could be the source of your sleeping problems. And it is extremely important to treat because it can lead to strokes, diabetes, and heart problems. I know you may resist this thinking about the machines, but another solution is a mouth guard instead of the sleeping mask if it's not too severe. I resisted getting the study for a long time, not wanting to believe it. Now I'm very concerned, since I learned that I might have another stroke with my sleep apnea! Did you get my PQ to you? Sara

Hi sara!! I saw a pq from you, but I've lost it, I shall hunt for it in a minute.About the sleep apnea idea, I just don't fit the mold for apnea, although I do snore! I know snoring is a symptom of apnea, maybe I should go to U of M and have a sleep study done? I'm very high energy, but when I crash I REALLY crash, if I lose sleep, as I'm doing right now, I will sleep today, in the afternoon. I hope you are doing great, sara!!Big hug,Lara

Hi Laura, im a mother of 3 and struggle with day to day tasks. I too suffer from insomnia or when i do sleep i can sleep for hours and hours but mostly find i am tired late afternoon and then wide awake at nite. I also have terrible guilt as i cant remember the last time i cooked a decent family meal or did the daily tasks i used to such as house work. I am over ridden with guilt as my 11 & 12yr old are being made to care for their 4yr old sister as im unable to cope very well with the pain. I have been passed from doctor to doctor for 3yrs for back pain and told my pain was psychosimatic so constantly given anti psychotic drugs. The stress i believe from it all has caused me to have myofascial pain syndrome on top of a torn disc and several disc bulges which were my initial problems but not found for a long time .

My neurosurgeons advice is to read a book on how to be happy!! I would appreciate to hear from or just to talk to anybdy than can sypathise with this pain as i have nobody to talk to and nobody seems to understand the distress this is causing me.Michelle

you aren't alone in this cycle of sleep no sleep!!! i go weeks with out sleeping but a hour a night and then for weeks all i do is sleep!!thank God i have a wonderful hubby !he will work 8 hours and then come home and cook our supper!!! i guess he knows that i'm going through a lot and is just there for me!!of course mine isn't all due to fibro ,i have had 4 back surgeries and about 20 other surgeries .just had my 11 hernia repair and during this surgery they removed more of my intestines and my apendix and some really hard scar tissue !!they found out that my nash has now turned into cirr. of the liver and i have crohns !!! hoping you the best !!

Yes I was in auto accident and have had 6 or more surgeries and have chronic severe pain in my back/neck, plus fibromyalgia,arthritis,CFS,nerve pain and so on. At first I was able to sleep like normal, but then the meds made me too sleepy and I could hardly get up in mornings to work and stay alert at work (in a fog). I would be in bed by 8-9pm and go right to sleep. But about 6yrs ago I started to do just the opposite and could not sleep. I have sleep apnea,but I cant wear a mask or head gear so I am on oxygen,but that really does not help me sleep (the noise helps). I can no longer go to sleep on my own and I feel like a zombie! I try to sleep but lay there restless..oh and yes I have RLS, so my legs feel like bugs crawling inside them. Even sleep meds like Ambein and others do nothing for me. I have tried to let my body work on it's own and not take anything,but then I am up for days until I just crash. then I only sleep a few hours.

My body by then is in so much pain I just want it to end. The pain that is, not my life. I still try to be positive each day as I am blessed in many ways. I could have been killed or lost limbs when I was hit by a car but I was not,so I am thankful for that. Anyway back to sleep. I feel for you and anyone who can not sleep from pain. It is terrible when you are so tired and want to rest your body,but it wont shut down. My mind races about things and I think that is the worst part of this. I try to relax, listen to music,read a book and all the things the docs told me and nothing really works. I finally found by taking 2 benedryl, melatolan and xanxa I can sleep, but it takes them over 4 hours to work and then it can be longer. That is what I am taking right now,but I have been given Lyrcia 50mg to try at night,but I dont really know when to take it as doc says right before bed,but doc I dont go right to bed,so I dont know if it will work right away, 30 minutes, 2 hours or what. So I hope someone can help me on that. You are not alone my friend and I hope you will find some relief soon as I do also. I will keep my updates posted if the Lyrica works to help me sleep and my pain. God bless~

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